It has been a year now since I actually have been feeling again. Within that time there have been plenty of ups and downs along with the twists and turns and I can confidently look back over the coarse, with a grin on my face. I feel proud that I have not just survived it but took a lot of it in. Sure there were a few corners that I closed my eyes for a minute and the occasion that I had to let up on the gas, but overall it was a good time. Through all the tears and the joy, I think that I am finally starting to maybe learn a few things through it. Right now, that seems to be the concept of being. The thought has been floating around in my head for a while, I often pause, think to myself what it would look like to be and then get on with my doing. It is easy to do, to just keep putting one foot in front of the other, it doesn’t take much thought, after time it becomes automatic, the treadmill slowly increases speed and without too much effort, you just adapt. But I don’t want that. My problem is then, what? How do you not do? Seems impossible. Today we went to the aquarium with the girls. While Jared chased Chloe I sat and fed Claire while trying to just soak it all in. Like most nice moments it was cut short by a toddler (thankfully not mine!) wondering off in a direction that was clearly against his mother’s plan. He was interested in looking at the ocean tide pool area through the fence, his mother desperately tried to get him interested in the display. She ran after him saying, don’t you want to see the frogs? They have water over here too. Claire and I relocated and yet another mom, was chasing after her youngster, trying to get him interested in the exhibit, with this it occurred to me that this is a very noticeable trend. Since I was already volleying the concept of being in my head, I couldn’t help but notice that both mothers were clearly trying to get their son to ‘do’. As a culture I think we are wired that way, even as toddlers we teach this. My next filter was to think about this in the lens of a special needs parent. The list of things that I NEED to DO is very long, so long that it would be very easy to hide in for roughly the rest of Claire’s life. She must be fed, walked, stretched, dressed, groomed and communicated with and that is just before school. Is it even possible to think about really trying to make this shift from doing to being or am I just doomed to fail? When we entered the land of special needs we were in the early intervention program. As the term suggests, the intervention was pretty comprehensive. We had a minimum of 9 hours a week of appointments for 18 months. During that time I learned to advocate for Claire, I would strive to get her everything that she needed without overloading her and giving her enough down time to process, but not so much that she was bored, it was a fine line. Then in 2008 research was released showing that mice with rett showed improvement when exposed to a rich environment. It was the evidence that I needed to keep going to keep pushing. Then I blinked and it was 2011. It has been 4 years to the day since we saw our primary doc and she was alarmed, sending us to the regional center for support. Today, Claire is ‘doing’ well. She is learning a lot, slowly getting stronger and more confident with her walking. As she napped today all of this swirled in my head, can I just ‘be’? What is that? Am I crazy for even attempting such things? Then Claire woke up, Chloe had just fallen asleep and I had to be quick to keep Claire from waking her. I climbed into bed to cuddle with her and she looked straight into my soul with her vibrant eyes and bright smile. She was happy and it sounded like she was trying to talk. I told her how I love the sound of her voice and that I know she wanted to control her mouth but that it doesn’t happen. She started to make the sound of the letter f. She carefully blew, with her two teeth over her bottom lip, she tried so hard. We laid for a long time just saying f words like fun, Friday, father and flower. I would wait and she kept trying to speak, over and over she would blow and try to say fun, she got pretty close several times! I was humbled by how hard she tried and how much she relished the smallest of her accomplishments. Then it dawned on me, I was being. While I was trying to get her to talk which can be construed as speech therapy, which would go under the column of do, I was following her lead, which I think is one of the defining differences. If I hadn’t been still enough to notice what she was doing, I would have moved her to the couch, put the tv on and missed a really beautiful time. As for the video, it was one of Claire’s favorites when she was into Seasme Street, now she likes the real Beatles, but it seemed fitting for the wide range of things that are in my head tonight.

2 thoughts on “Being

  1. mj says:

    love this. yesterday i took leah outside to roller skate. she wasn't really in the mood, so we plopped down on the asphalt and smelled the pink and purple flowers instead. i asked her to show me how to smell them and she did! she dug her nose right into the middle of the bush with an enormous grin on her face. i took the skates off and we spent the next 30 minutes wandering from bush to bush just taking it all in. 🙂

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